Benlysta #9 and some headache stuff

I had my 9th infusion on Monday. I felt OK during, but I’ve been pretty tired the past few days. It’s a give-in that it will make me feel like that, it just seems a little worse than usual. I can’t honestly say whether I feel “better” from it or not yet. The pain from the Chiari Malformation overshadows everything else. I can tell you that I don’t wake up in the morning feeling like I got hit by a car anymore, and I have days occasionally where I have a bit more energy, but I’m so focused on the intense headaches, I guess it’s hard to gauge what my lupus is doing. It doesn’t seem to be attacking anything, which is the important part.

There is one area of concern, though. My doctor informed me that my white cell count typically goes up and down, and that my blood test results from last month show that it is low. I wish she had pointed this out to me earlier. I feel like she doesn’t tell me things sometimes. I will call on Monday to find out what the results are for this month. I hadn’t been sick with a cold or anything, so it doesn’t really make sense. Wait and see, as usual.

My consultation appointment to see the neurosurgeon is finally set for next Friday. I get to see the head honcho instead of being passed on to one of his colleagues, so my case is being taken pretty seriously. It’s a 90-minute appointment, so I’m assuming it will be an assessment of all my symptoms, and possibly having some MRIs done right there, which would be nicer than the usual “go get an MRI in a few weeks and come back in a month to see the results” shit. I am so incredibly fed up with waiting forever. In the mean time I get to put up with agonizing headaches and a list of other crazy things. -End Rant-

My main concern is my white cell count and how that is going to impact when I can schedule my surgery. I’m already unsure when to schedule it as it is. It’s summer, and the summer heat makes me terribly sick. I am not crazy about the idea of recovering during the heat. But at the same time, I am also not crazy about waiting months to have surgery and continuing to feel the way I do, “eating the elephant one bite at a time”…but my white cell count will probably push it off til winter anyway. All in all, winter is the best option. But I don’t know how I am going to stand to wait that long, unless they can give me something to help deal with the pain and pressure and the fact that I want to throw up every time I eat, until winter rolls around.

All in all, it will be nice to talk to the NS and get some of these questions answered. I’m pretty anxious to see him.

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